Alex was diagnosed with type 1 diabetes 36 years ago. Since then he has run six marathons – the first when we was 15 – and the latest a few years ago. In 2006 Alex underwent islet cell transplant and was, for some time, insulin independent. He now lives in Southeastern Arizona where he is working on a novel, teaching college English, pursuing a Master’s degree, and training to run his first 50 mile race. Read full bio

The Church of Hypoglycemia

Low blood sugar episodes have provided me with some of the most creative, and spiritually insightful and expansive, moments in my life.

Once, when my blood sugar was very low, I experienced the certain realization that the interconnectedness of all life on the planet contributes to the betterment of mankind in a way that is unfathomable but also active and intensely real.

Another time I felt with a startling degree of certainty that the life I was living was a life I had lived before and that it had a definable purpose for its existence.

And once, for a few minutes, I saw with pristine clarity the specific ways in which the people in my life contributed to who I was as a person and how I, in turn, contributed to their existence in a positive manner that would resonate down through time and effect others in ways I could not imagine.

I also once decided that the perfect diet to follow was one in which I purchased all my food only by color.

Then there was the time I plotted out a way that I could actually perform Waiting for Godot as a one-man play. All right, so they ain’t all winners. But, they are altered states of consciousness, in their way.

This sounds like heresy. To say anything positive about a complication of diabetes that could, and does kill people, is like extolling the virtues of cigarette smoking because it looks cool. And I am in no way saying that it’s a good idea to amp up your insulin dosage one day in order to touch the hem of God.

As far as I’m aware, there is not a direct cause and effect relationship between hypoglycemia and spiritual and creative expansionist thinking. And there probably haven’t been any clinical trials to try and find one.

But that doesn’t mean it does not exist.

I know that, on those rare occasions when random and meaningful insights rain down while my blood glucose reads in the low double digits, it’s caused by a chemical reaction in the brain due to a lack of glucose. But that doesn’t communicate an appreciation for the experience any more than staring at the molecular model for oxytocin explains the foundations of love.

The experiences have so far enriched my life. They have given me a deeply felt spiritual appreciation about existence. And no, that does not mean I wish to become the first pastor of the Church of Hypoglycemia. As a Roman Catholic who is also a quarter Jewish, my spiritual life is grounded and fairly straightforward, if admittedly confusing. What I mean is that for certain some hypoglycemic experiences have imbued my belief system with greater gravitas and depth while also instilling in me an improved appreciation for the human condition and the spiritual connection of all things.

For a condition that does little more than beat me up all day long, I find that to be a pretty cool bit of a bonus. So, while I’ll never understand it, I’ll take it. 

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Blood Testing Machine Break Up

Yesterday was the end of an era. My blood testing machine and I broke up.

Neither of us wanted to end it. My machine had been steadfastly and happily testing my glucose levels for almost five years. I know for some that’s a long-term relationship between a blood machine and a diabetic. But, the whole time we were together we figured if it ain’t broke, why fix it? And it was anything but broke.

It wasn’t always like that. When we first started out, my Accu-Chek and I didn’t like each other one bit. It wasn’t really the machine’s fault. When the Accu-Chek came into my life I simply wasn’t ready for a new machine. But, like an arranged marriage, I had no choice. I had to go with the machine because my insurance company mandated it. I got a notice saying they would no longer cover the test strips and machine that I had been using for three years. As a result, overnight I found myself giving my sweet, little One Touch UltraMini—which I couldn’t imagine living without—the ‘old heave ho.

I would look at my Accu-Chek and remember how just days earlier I would be able to slip the Ultra Mini into my pocket and take it literally everywhere I went. We were joined at the hip. To be blunt, the Accu-Chek was bigger and slower than my OneTouch. It took me a while to warm up to it.

The turning point came one day when I thought about my very first blood glucose-testing machine. It had been 25 years earlier. The thing was as large and heavy as a brick. It required constant calibrating. The test strips cost twice a much as they do today. But, despite all that, I loved that machine. It enabled me to control my diabetes better than I ever had before. It freed me from the stigma and inaccuracy of using urine test strips. It showed me a whole new way of living—a better way of living.

With that history on mind, I decided to give the new Accu-Chek a fair try. And, wouldn’t you know, over time I came to trust and rely on it without reservation. I eventually stopped pining for my old OneTouch. I started looking forward to testing three or four times a day with my new machine. I learned to stop looking back because, frankly, it didn’t do either of us any good.

Then, a week ago I was shoved into the middle of a crossroads once again. Another insurance company sent out another notice saying they were changing the kind of blood glucose meters they would cover. When I got the notice I had one drum of Accu-Chek test strips remaining. I used them sparingly, counting the days until they were gone and then, just like that, yesterday I used the last one. Time goes by so quickly.

Now I will turn to my new machine. I’m sad. But, I’m also hopeful that one day I’ll be able to love it unconditionally. I think my Accu-Chek would have wanted it that way.

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DBlogWeek #5: Life Hacks: Lifesavers and Rubber Bands

Until this topic came up, I never really thought about the little things I do to manage my diabetes a little better. I, like everyone I suppose, have my own shortcuts and tricks to make life with diabetes easier.

The first one is Lifesavers. I always have Lifesavers with me when I leave the house. And I don’t mean any old Lifesavers. I’m talking about a roll of Lifesavers. It doesn’t matter the flavor (unless it’s mint, which I can’t really eat quickly in case of low blood sugar) but I am partial to five flavors. Lifesavers are convenient, small, and fit easily in my pocket. Other roll candy, such as Mentos, are too long or are not wrapped sturdy enough. Sometimes they break and spill into my clothes.

Lifesavers, which have been around since 1935, never let me down when my blood sugar does. That’s because when I have the first inklings of hypoglycemia I want something more than just something that can bring my blood sugar back up quickly. I want something that, if I eat it in pubic, is unobtrusive so I don’t get everyone around me freaked out. Plus, I want something that tastes good because sometimes hypoglycemia makes for a nice excuse to have a treat. And lastly, when it comes to fighting low blood sugar, you can’t beat a name like Lifesavers.

I also use rubber bands for my insulin. I hit upon this recently. When I leave the house for the day, or for work, or to go out overnight, I don’t take my Lantus and my Novolog in their bottles with me. What if they break? What if they become exposed to high temperatures? (I live in Arizona.) So, I withdraw measured amounts out of my two bottles of insulin and inject them into empty bottles, leaving my main supply in the refrigerator. Then, I put a rubber band around the glass bottles with the travel doses. That allows me to knock them around in my pocket or bag without worrying about them breaking. The rubber bands also let me differentiate which bottles are which when I have to grab one and go in a hurry.

The last little trick I use, although rarely, is how to figure out if your blood sugar is high without a machine. I learned this when I was researching a book about clinical trials. In 1776 a physician tasted the urine of a diabetic and noted it tasted sweet. That, of course, is from the excess sugar the kidneys are trying to flush out of the body.

The last time I had to resort to this rather unpleasant trick was when I travelled to Uganda. The Ugandan guards in Brussels for flight check in to Entebbe didn’t like my blood testing machine. So they took it. Who was I to argue with a guy with an AK-47?

For the next three weeks in Africa the only method I had to at least get a sense of where my blood sugar was—a very general sense of not high, high or very high—was by running a finger through a stream of my urine and tasting it.

This trick works when all other resources are unavailable. And, while it’s not as gross as one might imagine, all things considered, I prefer the taste of Lifesavers.  

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DBlog Week #4: Five Ways Diabetes Has Made Me Healthier

One of my favorite jokes is, “Aside from that Mrs. Lincoln, how was the play?” It reminds me of having diabetes. It’s like after telling someone you have diabetes and hearing them say, “Huh. But, aside from that, how’s your health?”

To which I would say, “Great!” And I can say it is great because I know for a fact it is great. I know this because, as a direct result of my diabetes, I’m healthier than I might otherwise be without it.

Sounds strange, I know, and I’m not being Pollyannaish about this. Here are five real-world ways diabetes has made me healthier:

#5 – I see doctors. Because of diabetes I visit doctors regularly and, together they and I, closely monitor my health on an ongoing basis. Not a lot of people do this, even if they can. I’ve been doing this for years and will continue to do so because my diabetes needs close monitoring and adjusting, and that means my overall health gets monitored and cared for.

#4 – I eat well. While I don’t hang out at the local health food store, I do eat relatively well, and I don’t overeat. I do this not only because it makes me feel better to eat real food rather than McDonald’s, but also because doing so messes with my blood sugar for hours and, frankly, that makes me feel like crap. Also, I don’t overeat because as a kid growing up with diabetes I had to eat at certain times. Eating became drudgery and now that I’m grown up and emancipated from childhood, I look for any excuse to not eat.

#3 – I exercise. I exercise for a variety of reasons. It chills me out. It pulls the wrinkles out the day. It makes me feel better mentally and physically. But, I do it regularly because my blood sugar goes haywire when I sit around on the couch being lazy. If I have a choice between running three miles or dealing with bouncing blood sugars, you’ll find me out of the road every time.    

#2 – I’m informed. I’m astute about health and health issues.  As a diabetic I’m tuned into health research, trends, and other factors that affect my health, as well as the health of society at large. I don’t trust just anyone to tell me what’s fact and what’s fiction when it comes to health. I need to know it’s been tested and comes from a trusted source. I am a very informed consumer of health products and very knowledgeable about health claims. If I have doubts or questions, then I can always talk to one of the doctors I have a years-long relationship with already.

#1 – I’m in touch. I’m more in touch with my body than I would be if I didn’t have diabetes. A doctor told me years ago that diabetes is the great do-it-yourself disease. He told me that with this condition it was up to me to know when to adjust my medication, my food, my exercise, and my life to preserve my health. I listen to my body all the time. Do I need to test my blood? Do I need insulin? Do I just need a nap? Is my sugar going high or low? How do I feel before I run? My body provides me with hundreds of points of input every day and by listening to them I am healthier than I would be by turning a deaf ear to them.

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DBlogWeek #3: Down on Diabetes

I personally never get really down because of my diabetes. I only get down because of how others are down on diabetes.

Overall, diabetes is a tough gig. I’m probably like most diabetics in that I do get frustrated about specific aspects of it. Having my blood sugar go low during sex is not fun. Remembering to have insulin, a syringe, and a roll of Lifesavers whenever I leave the house is a chore. Calculating what I eat, then feeling like crap because I’m bad at math and my blood sugar went high after a meal, makes me feel stupid. Making sure my blood sugar is balanced before I go for a run is a drag.

Thank goodness I don’t waste my time despairing over diabetes in the abstract. I know uncontrolled diabetes is a leading cause of death. I know it is a leading cause of kidney failure, blindness, heart attack and lots of other gruesome things. But, like a teenager worrying about old age, these facts don’t really intrude upon my life on a daily or debilitating basis.

The only thing that truly and consistently gets me down about diabetes is how the general public treats the condition, and in particular, those who have it. Which is to say, they tend to dismiss the disease as a simple result of lifestyle choices. They tend to blame diabetics for having diabetes, in much the same way the public tends to blame smokers for suffering from lung cancer or heart disease.

Many people tend to think that people acquire type 2 diabetes by eating too many sweets, and being overweight. While lifestyle and weight are factors behind the causes of type 2 diabetes, they are not the sole causative agents. Nor is overeating, or eating unhealthy foods, the deterministic “fault” of each and every individual who makes unwise dietary choices. The media, advertising, convenience, lifestyle dictates, and overall culture shapes the ways in which people lead their lives and make the choices they make.

Type 2 diabetes is a symptom of a sometimes ill society whose overall health could use examination and improvement.

Instead of devoting resources to understanding how these complex factors work to harm people’s health, many people find it easier to point a dismissive and judgmental finger at the diabetic, say, “It’s your fault,” and move on.

Stigmatizing people who are sick does very little to help them get better. Trying to understand the causes of diabetes from a cultural perspective, rather than from a blame perspective, can help alleviate its spread and minimize its impact on those who already have it.

That’s something I could get down with.

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DBlog Week Post #1: Be the Change You Want to See

When I was 14 years old I was angsty and surly and taciturn. Or, to put it another way, I was a teenager.

I hated my teen dramatics. I was alienating friends and family by being generally unpleasant to be around. For a week I wondered why I was acting like such an idiot. Then, one evening before nodding off, I had a genuine ah ha! moment. My sour attitude had to be a result of my diabetes, which had been a bit out of control for months. That must be it. What else, after all, could it be? Could it have been that I was just a jerk? No way, not if there was a solid medical reason for my jerkdom.

The next day at school, with this self-diagnosed medical epiphany firmly in hand, I saw my friend John Kelly in homeroom.

“John,” I said, “I’m sorry I’ve been acting like an ass but, I have figured out why. My diabetes is out of control! High blood sugar is causing me to be this way. Isn’t that great?”

“Oh, give me a break,” he said. “You blame everything on your diabetes. Everything about you is your diabetes. Don’t hand me that crap.”

And he walked away.

He was correct. I did blame everything on my diabetes. Or, if I wasn’t “blaming” everything on it, I was defining myself by my diabetes and showing only that person to the world. I’d been diabetic for two years at that point. For those two years I had been portraying the sum total of my personality to others, the entirety of my life to the world, as a diabetic. John Kelly helped me see that I had also started regarding myself as little more than a walking talking condition first, and as a person second. That, I decided then, was boring and limiting.

I decided that, to change how the world saw me, I had to think of myself as something more than a medical case. I was not a “diabetic.” I was a person who had diabetes. There’s a big difference.

 By thinking of myself primarily as a diabetic I got sympathy and help and care and it was great. People would ask me is there anything I can do for you? How are you feeling? Are you all right?

But it was also cheap. Highlighting your weakness to the world, or what the world sees as a weakness, is a cheap way to get sympathy from anyone.

The way to change the world is to be a person first, and a diabetic second. Don’t just tell people that diabetes is nothing to be afraid of. Don’t say it’s not limiting. Don’t get on a soapbox about how it’s not a disability. Instead, show them.

Be the change you want to see, and the world changes.

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Personal Victory: Stem Cell Breakthrough for Type 1 Diabetes

Finally.

Researchers announced a few days ago that, according to the MIT Technology Review,  “in the most recent advance for the cloning-based approach, a new report describes stem cells produced by cloning a skin cell from a woman with type 1 diabetes. The researchers were then able to turn those stem cells into insulin-producing cells resembling the beta cells that are lost in that disease. The immune system attacks these pancreatic cells, leaving patients unable to properly regulate their blood sugar levels.”

This breakthrough, using skin cells and not controversial embryonic cells, comes at the end of a long road to develop such possible cures. And, of course, it’s only the first step in a process that might continue for years before it is applicable. That aside, the announcement marks a great day for me personally.

In 2005 I underwent two experimental islet cell transplants to cure diabetes. Insulin-producing islet cells from a total of three cadaver pancreases were implanted into my liver. Once nestled in, they began to produce insulin for me. The procedure effectively cured me of type 1 diabetes.

To keep my body’s immune system from attacking and killing the delicate cells, I was put on a strenuous regime of immunosuppressant drugs, similar to what patients with full organ transplants receive.

These drugs, in a word, sucked.

Not only were they physically difficult to tolerate, their potency, required for curbing my immune response, was actually, it turned out, harming the islet cells. After less than two years, the new cells in my liver started to die. Soon after, I was back taking insulin and living as I had lived for the 30 years before the transplants, as a type 1 diabetic.

My reaction to this was not despair. I did not regard it as some tragedy of reversion like I was living a scene from Flowers for Algernon or The Awakening. The procedure, after all, was experimental. There were no guarantees of success. I knew this going in, and I never lost sight of the overwhelming likelihood for failure.

I said to people, and wrote in my book, Chasing Medical Miracles: The Promise and Perils of Clinical Trials, that despite the personal cost, I was gratified to have contributed, in my small way, to finding a cure.

But, I’ll tell you a secret. I was pissed.

In all likelihood, the cells from generous organ donors would have kept working if not for the toxic, immunosuppressant drugs I had to take. If those cells had been stem cells I would not have needed to take that poison. Where, I wondered, were the stem cells? Why were they not put into me?

For me, my gratification for helping find a cure, while sincere, was abstract and amorphous and intellectual. It wasn’t emotional and from the gut. Politics and religion had interfered with a cure for a crippling and deadly disease. Not just in me, but in millions of people.

Then a few days ago came the announcement about skin cells and cloning islet cells for a type 1 diabetic. Now, it is not merely abstract. It is one step closer to being real. Really real. And now, finally, I can say, I’m glad. I am pleased, gratified, and over the moon happy that the things I went through—that the sacrifices made by the medical team who worked on the procedure—are now to contributing to moving research substantially forward toward a possible cure.

Finally. 

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Happy Birthday, Diabetes

For the anniversary of my diabetes my girlfriend said she’d buy me a cake—and eat it in front of me.

That would’ve been a good start to a strange celebration. Although, truthfully, it’s not like I have a big party with balloons and a clown. I don’t celebrate it in the traditional sense. Every year I simply and quietly note or mark the date of my diabetes diagnosis, April 19. There are many other anniversaries and important dates, even in my own life, that I forget or only end up remembering after they’ve passed. But, April 19 never passes without acknowledgement. It’s a benchmark. It informs me about how I am doing with my health, and my life overall.

Five years and one day after my diagnosis at age 11, I ran the Boston Marathon. I recall setting off from the starting line at Hopkinton and thinking about my anniversary. Cresting Heartbreak Hill I laughed to myself about how five years earlier I was in an intensive care unit near death with a blood sugar of 1010, weighing all of 60 pounds, and with my kidneys sputtering to hold onto life. And I will never forget crossing the finish line on Boylston Street and thinking about my diabetes, “Bite me. You ain’t all that.” (Hey, what do you want? I was a kid.)

For my ten-year anniversary I was in college. I was three weeks shy of my 21st birthday. That, however, was not a true barrier to marking my second sort of birthday. I went out with some friends (for reasons not associated with my special day) and got more than a little tipsy, and more than a little sentimental with myself. I sat among people I loved and realized that I felt good. I counted my fingers and toes. I recalled great triumphs over adversity, and chastened myself for some losses, such as having gone to the hospital for a hypoglycemic coma. I raised my glass on my own alone, toasting my own good fortune, and smiling at my own perseverance.

  My 40th actual birthday was sort of cool because it came on the heels of my 29th birthday for my diabetes, so at least the number helped me feel young.

On the 30th anniversary of my diabetes I no longer had it, having experienced a cure through an experimental islet cell transplant. So on that actual day, I had actual cake!

By the occasion of the 32nd anniversary of my diabetes, the transplant had failed. I had diabetes again. So on that day, I did not have cake, actual or otherwise.

And this year, on the 37th birthday of my diabetes, I slept late. I did my morning shot. I went for a run. I drank Diet Coke. I counted my fingers and toes. I felt good. My girlfriend got me a cake. It sure looked good.

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Low Blood Sugar: Harder on Those We Love

Low Blood SugarAs a diabetic I know that low blood sugar is difficult to deal with. But, for the people close to me, for the people who love me, it’s harder.

My cousin Daniel once told me what it’s like sometimes when my blood sugar goes very low. We were recounting what happened after he spent 15 minutes coercing two boxed fruit juices down my throat to bring me out of a particularly severe episode. I had no memory of it at all. “Just before you got really bad, I could tell,” he said. “Your eyes go dead. It’s like you’re not even there.”

It’s easier on me in many ways because I don’t remember. It’s easier because I’m not there.

The first time my blood sugar really crashed hard I was in college. It was during a class in which we sat in a circle and read what we were writing. In that class on this particular afternoon I took my glasses off and started chewing on them. I looked at my friend Ed Dumas and said to him, “Ed, I’m fucked,” before falling to the floor and flopping around like a con man in a revival meeting.

For reasons that, to this day, Ed doesn’t even understand, he jumped up, ripped a set of venetian blinds off the window, and yelled, “Nobody move! He’s a diabetic!”

Then he called an ambulance. I came to in an emergency room. When the doctor asked my name I didn’t know. “I’m sure it’s in my wallet.” I was unable to answer the doctor’s question about the day. I didn’t even know what year it was. It came back to me when Ed stepped up, put his hand on my shoulder, and asked if I was all right.

Once, at a new job, my sugar went so suddenly low at my desk that I could barely see or stand, much less think. My friend Jeremy noticed I was not myself. He tried to get me to drink a Coke. I, however, was in a total panic. I was certain my boss would see me in this condition, and that I would lose my job. I begged Jeremy, in a loud slur, to not tell. This attracted attention. I ran from our farm of cubicles into a hallway, then collapsed on the floor irrationally terrified over my impending termination.

The next thing I recall, my new boss and Jeremy were holding me as I drank some juice, then helping me to my feet. It turned out my boss’s wife was a diabetic. When I came back to my cubicle everyone gathered around me looking stricken and concerned. Then my boss relaxed everyone by joking that he needed to stop putting the fear of God in his employees like that.

Apparently, when I become inappropriately affectionate, it’s a sign of impending doom. I know this because the first time I told my girlfriend that I loved her we had only been dating two weeks.

“Well,” she said, “that’s nice.”

I then proceeded to insist to her that her mother’s birthday was December 14, which it is not. She realized something was not quite right, convinced me to drink some orange juice, and filled me in on the surreal drama that had just taken place.

Some weeks later I told her that I loved her. She asked me if I needed some juice. I said no, I didn’t.

“Good,” she said, “I love you, too.”

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Confessions of a Bad Diabetic

I just read a study that says it’s OK for diabetics to do their shots through their shirts, or through their jeans, or bathing suits or any fabric. Way back in 1997 five researchers studied 50 diabetics who practiced this “rogue” method of insulin delivery and concluded that, “It is safe and convenient to inject insulin through clothing.”

“Hells yeah!” is what I said to myself upon discovering this bit of research. I’ve been doing shots through my shirt for decades. I don’t do it as a form of rebellion against The Diabetic Man, or as an empty flaunting of the rules. I do it for convenience and because when you’re on a crowded train, in a restaurant, or running the 18th mile of the Boston Marathon, rolling up your sleeve or lifting your shirt and jamming a needle into your arm or your stomach is not just bad form, it’s fairly well off-putting for anyone near you.  So, when the occasion arose, I would surreptitiously take out my syringe and bam! no one was the wiser.

The study was a relief. All the years that I engaged in this practice I felt guilty that I was doing a bad diabetic thing. What was worse was a friend would see me do my shot through my shirt and wonder about whether I was a good, or a bad, diabetic. In fact, the only times I’m ever chastised for the diabetic shortcuts I take, or the other “rogue” practices I engage in, is by a non-diabetics expressing shock—shock!—at my various behaviors.

The other day after making a shocking—shocking!—discovery in my kitchen my girlfriend gave me a short speech about the health dangers of Froot Loops. Now, I like my Froot Loops. And Cocoa Puffs. And don’t even get me started on Lucky Charms and Coco Krispees. I explained that yes, I do eat the Froot Loops. But, I do it once in a while, as a treat. I do not, for instance have half a box of Froot Loops for dinner. (All right, there was that one time …) I also told her that I calculate carbs and take the requisite insulin to counteract the effects of the aforementioned Froot Loops. She seemed, if not reassured, at least comforted that I appear to know what I’m doing.

And I do know what I am doing! Until, that is, the beer. In the insightful words of my friend, Michael Reed, “I like beer.” Calculating insulin regarding beer can be tricky because 1) it’s a rolling ingestion that you don’t exactly plan to the gram beforehand, B) the effects of carbs in alcohol on blood sugar are not as straightforward as calculating pure carbs, 4) the counting of the actual numbers becomes, um, intimidating at some point past 1 a.m.

But, when I transgress I do not panic. I just sit back and wait for those studies that conclude it is safe and convenient for diabetics to eat Froot Loops and drink beer.

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